About trying to live with ms and discovering that suddenly most places are inaccessible and that life as a handicapped person is very different.

Saturday, August 29, 2009

Sharing the pie.

I have been in bed now 24/7 until a pressure sore that developed last year has healed.

It as a result of not getting a wheelchair in my size,that gave me the support that I needed.

The wheelchair was not in my size, the seat is 10 cm’s too long and approximately 7 c m’s too wide.

This resulted in a very deep and wide pressure sore which has taken over a year to heal, all the time I have not been able to sit so have been half lying half sitting in bed.

Had thought that seeing as there were some serious mistakes made when I was given the electric wheelchair, that things would be speeded up.

Really thought that this is what I was told, so was really disappointed when I was told that it would take longer than I had hoped.

Really hoped for September so I could finally get out of here and live a little, instead I have to wait until October.

Determined to stay calm and cool about having to wait until October before I will get my electric wheelchair well adapted.

I guess if it means that the wheelchair will be well adapted, it will be worth it, as I need to know that I will be sitting well supported.

This is what I need now more than ever after having to spend over a year in bed in order for the huge pressure sore wound to heal.

It has been a hell of a long time healing, but it is healing and doing so very well as it has also healed by filling up well from the inside.

Sitting well supported is a pre-requisite for sitting for me, anything else would be asking for an immediate repeat of this last year.

This is well know to my consultant, Michelle, but did not stop her telling me that it was my own fault for having a two month procedure.

As it had been my own choice to go with Summit as opposed to Carolien, from Welzorg, if I had chosen Carolien I could already have had my chair adapted.

She knows that Carolien was not a real option as her method is too hit and misses, especially as last year she had not been able to give me the support that I needed.

This year I need even more support and it is not easy to see exactly what sort of support I need and where.

Summit’s vacuum mould is a far better method than putting me in and out of the chair as Carolien tries to modulate the back rest to give me the support that I need.

Both Michelle and Carolien said that Summit was the only option for me seeing as my need for support was greater this year than last year.

That is because the muscles in my back and sides have been inactive for a year and have become flaccid and can not keep me as upright as I need to be.

So seeing as they too chose for Summit, it is strange to be blamed for the slowness of the burocracy involved..

It is also strange that Welzorg have to be involved, so they get their share of the pie, as they do not actually do anything but say it is ok to do it to Summit.

Basically they behave like a contractor hiring a sub contractor.

Funny really that of the three people involved only one actually does something and that is the man from Summit, Elwyn.

The other two Harm, Welzorg and Michelle, ARCA do nothing but nod their heads and put the hours on their time sheets.

We were wondering how much a consultant therapist and a consultant engineer get for their consultation on the adaption of my wheelchair.

I bet it is a nice sum of money indeed; hence they want to try to have as many meetings as possible.

That is the reason the second meeting can not take place until Michelle is back from holiday, as she has to be there.

Even though she will do nothing whatsoever to contribute to the appointment apart from her presence, we still can not go ahead without her.

Can’t see why, now she has introduced us to Elwyn he can not crack on and make the mould and fine tune it and it could all be more or less ready by the time she is back from holiday and then Michelle could check it very thoroughly.

And the paperwork could be passed to the Amsterdam City Council for rubber stamping and getting paid.

Things could happen faster and more people could be assisted in getting the aids they really needed.

This however does not happen what happens is the slow burocratic procedure we are now stuck in where all the middle men and women get their share and then sometime, the client finally may get the mobility aid they need.

This is what I have observed in the three years since my diagnosis, at first I was pretty incredulous.

Could not believe there was such a two tier system and there were so many people employed to assist handicapped people who seemed to have no empathy and some no interest in their clients.

Have been mercilessly patronised, shouted at and verbally attacked, have been physically neglected, one carer caused the skin to peel off my ankles.

Others could not use the hoist and could not seem to learn, they caused me any amount of pain, painful spasms and quite abit of worry too.

Others just did not turn uyp, one abaondoned me twice in one day, leaving me to piss in the wheelchair.

They, the carers that came here daily also managed to break a lot of things, mostly favourite cups and plates.

But by far the worse for terrible attitude have been some suppliers like Revacore, who delivered the mobile shower chairs; one was useless, it took three months to get one that I could use.

Their helpdesk were incredibly rude and hostile when I phoned to explain that I could not use their very clumsy, heavy and much too large wheelchair shower chair.

And United Care who provided the passive lift, which gave us 7 months of pain, fear and worry before we were finally listened to by ARCA and got another safe and better hoist.

Welzorg treated me badly and like a problem person, ever since I had the audacity to ask to postpone an appointment until I had my first appointment at the RCA, the Rehabilitation Clinic, Amsterdam.

My thinking was that the doctors and therapists might have good advice to give me about the sort of wheelchair that I would need.

This was not well received by the Welzorg employee who phoned to give me an appointment; she told me she was not sure that I would get another appointment before cutting the connection.

Ever since every Welzorg employee from sales staff to delivery staff has all approached us with sneering condescending attitudes.

In ARCA and Welzorg, there seems to be an almost institutional antipathy towards their clients, the same attitude exists in the other Council advisors the CIZ, who recommend that people get re-housed according to their needs.

Their first advice in the summer of 2006 was to give me the right to apply for ground floor apartments.

These were not places accessible to a handicapped person and had none of the features that I needed.

Finally the RCA got my paper work corrected and I was now able to apply for adapted apartments.

The woman from the CIZ knew that I had Primary Progressive MS and I could not no longer manage the steps alone, she knew too that the progression could be rapid.

My case manager from ARCA, also knew that my MS was progressing rapidly, she had the task of getting a shower chair fitted in our bath room along with handy grab rails and hand holds.

She was asked to provide them quickly in November 2006 and it was done at the end of February 2007 when I could no longer shower independently.

Sadly there is no fast tracking for progressive diseases for accommodation and mobility aids as there should be, so I have consistently not had what I needed when I needed it.

This system needs to be changed to be able to respond swiftly to the needs of people with progressive diseases.

It should not be run purely as a cost cutting exercise as it is presently run, cost cutting meant that my electric wheelchair was not customised for me and therefore did not give me the vital support I needed to avoid pressure sores.

This cost cutting resulted in denying me the ability to go out and socialise and be a part of where I live.

I hope that in mid October when I get the adapted chair I will finally be able to go outside and once again feel part of this vibrant neighbourhood.

12 comments:

Hello Herrad! Such injustice makes me angry. We have a one tier system - everyone is treated with equal incompetance. I'm hoping the situation is better on PEI, I've often thought about driving across the border and paying to see a doctor in the U.S. On a lighter note, I love the photos today, lol! Especially the pizza. I will eat melted cheese on pretty much anything!Hope you are having a nice Saturday, I woke up to rain falling on the tin roof, one of my favourite sounds!!:-)

Hi Rain,Thanks for your supportive comment.I too love melted cheese, pizza, cauliflower cheese, lasagna.We are having a pleasant evening, we are.This morning was rainy and cool and now it is warm and the fan is on.Love,Herrad

Herrad - your post gave me new perspective on your situation. I've often thought circumstances for the disabled were better in Europe, where there was more of a social-welfare state model than in the US. It sounds though that there's a lot of BS you have to endure to get the support.

Why should you have to endure such delays so that everyone gets a cut of the tax dollars paid for you to get a decent wheelchair? It's obscene for you and for your country's taxpayers.

herrad, as you know, ice cream makes everything a little better! but the incompetance you've had to deal with is unbelievable! when people act like that, i can't help but wish that someday they need help for something, and see exactly what it's like...

Hello Herrad,I follow your story with empathy and a feeling I cannot do anything about it. That is how bureaucracy "works". There are delays, snafu's, rude/rotten caregivers both in your world and our US world. The delays and abuse you have endured, however are negligent and restrictive to your independence.Your country needs a panel or group of physicians and rehab specialists-nurse/rn/PT/etc to review specialized equipment so that you could get what you need in a timely fashion.Don't take negative comments from jerks or control freaks personally.They treat everyone badly and banking some serious Karmic bad vibes.Your pies, on the other hand, look delicious and glad I stopped by.

Herrad, I understand the indignities, the injustices and the waiting you are enduring as a result being lengthened now, for the outing. Just keep focused, my daughter has had an event this week that hosted discrimination and police where they shouldnt have been. Life in this world as someone with special needs of any kind, health, illness, mental health, etc is far more difficult than it should be, our society has things backwards.

Hi Cranky,Thanks for coming by, its frustrating here as there is social-welfare but you have to go through the hoops. to get it.Afraid they took their inspiration from the US and decided to libralise the market here and make it profit orientated.And this is the result.Its dreadfdul they way most of the budget for the sich and handicapped gets spent on salaries of advisors.You are right it is obscene.

Hi Libby,Instead of ice cream it was plum crumble and custard which was very good.I troo hope that one day they will need help or someone close to them....

Hi Bobrobert,Its very frustrating isn't, hate always getting things too late fdor me to use.Like the scooter that came just when I could not walk anymore so could not use independantly.We have to be patient arGh!

Hi Mary,Thanks for your comment, I try not to take it personally, as I know for them it is just business.Which is a sad world view but you are right they are sad people who I do feel sorry for.

Hi Stephany,You are right our society has things back to front and end up caring for cash when it is people that matter most.Hope your daughter is ok, will visit your blog once I have posted this.And do not worry I am focussed on my oputing in October.

Thanks all you lovely friends for coming by and making e feel happy to see your comments.Have a good Sunday.Love,Herrad

Yes, there can be too much pie(wanting pie now). I am saddened by all that you have been thru(esp the parts that seem so unnec), but I am delighted for you at the prospect of your getting up and around and outside again. ~Mary